Old timer..high CEA....freaking out

taraHK
taraHK Member Posts: 1,952 Member
edited March 2014 in Colorectal Cancer #1
Dear Ones: I'm a very old timer. Diagnosed Dec 2002 with Stage III rectal cancer. Initial treatment in 2003. Since then I have had 3 recurrences. All single mets in lung, treated with surgery + chemo. I've been NED for almost 2 years. (Had a 'false alarm' last summer - talk about nerve wracking! A delightful reprieve....).

CEA has NEVER been a reliable marker for me (never elevated, at original diagnosis or with any of my recurrences). But, a couple of weeks ago: 3.49. OK, not high - WNL - but unusual for me. Repeated the blood test - found out today CEA is 6.5. Not great news. SOOOO - PET scan schedule for this coming Friday. The good news is I'll get the results Saturday.

OK - deep breath. When I was diagnosed, 7.5 years ago, my dream was to see my two children finish high school (as some of you know, and as I have said previously on this board). Well, my youngest is 3 weeks away from that -- so my dream has come true!! I am truly happy. But, dammit, I sure would love to crack that 2 year mark -- since diagnosis, I've never made 2 years without a recurrence.....

Please keep me in your prayers, as I keep all of you in mine.....

Tara

Comments

  • lcarper2
    lcarper2 Member Posts: 635 Member
    #2
    Tara
    I will pray for you and hope the pet comes back good . We all want to hear the wonderful news that we are NED and most do but than there are some of us that get the other news I hope you stay NED and this is just a false alarm.
  • nudgie
    nudgie Member Posts: 1,478 Member
    #3
    You
    are in my prayers!!!!!!!!!!!!!!
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #4
    Will pray Tara!
    I'll gladly lift you up in prayer! Please let us know as soon as you hear anything.

    Diane
  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    #5
    You are in my prayers.

    You are in my prayers.
  • betina61
    betina61 Member Posts: 642 Member
    #6
    Tara
    For sure I will keep you in my prayers, but reading your post you mentioned that CEA was never a good marker for you,so why not to think that the reason could be some other things that can cause the CEA to rise.
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #7
    Tara - I'm like you - CEA
    Tara - I'm like you - CEA has never been an indicator for me. That said, I would feel like you do (gee I was near hysteria when my CEA came back at 0.7), but most likely if it has never been a good indicator then it still is not. Wishing you good health and relief from this worry.

    Betsy
    Stage IV
  • taraHK
    taraHK Member Posts: 1,952 Member
    #8
    Betsydoglover said:

    Tara - I'm like you - CEA
    Tara - I'm like you - CEA has never been an indicator for me. That said, I would feel like you do (gee I was near hysteria when my CEA came back at 0.7), but most likely if it has never been a good indicator then it still is not. Wishing you good health and relief from this worry.

    Betsy
    Stage IV

    thanks all
    Thanks all for the warm words.

    Bettina, Betsy: you are right. You are right. Could be some strange anomaly. Hoping it's another false alarm! I'm trying to keep the fears at bay till I know more.....
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #9
    Gotcha covered
    Tara,

    I will certainly be praying for you!

    *hugs*
    Gail
  • dorookie
    dorookie Member Posts: 1,731 Member
    #10
    I hear ya
    I remember being so scared because I had always asked God to let me live until my daugher was 18 and on her own. Well I was going through my second round of treatment when my daughters 18th Bday was coming up, let me tell ya I was scared. I felt bad because I felt like I had to renig on my wish because I wanted to live, way past my daughters 18th Bday. Well she is past 18 and I am still here.

    I will be praying for you and for good news.

    *HUGS*
    Beth
  • crazylady
    crazylady Member Posts: 543 Member
    #11
    CEA
    Hi Tara,

    I'm so sorry that your CEA is up and that you are worried. My CEA has never been a marker so I can understand why you are freaking out. I'm sending positive energy your way that it turns out to be nothing.

    Congratulations on the high school graduation! I had the same dream when I was diagnosed 6 years ago and my youngest also graduates in 3 weeks. Dreams can come true!

    I hope you make it to 2 years with no recurrence. I'll be thinking of you on Friday.

    Jamie
  • JR6020
    JR6020 Member Posts: 14
    #12
    Happy for you
    Tara, First would like to say it's awsome you made it to your kids graduation, now shoot to be around for your grand-kids graduation. I'm very new at all this, no family history (don't even really know any one with cancer). That all changed on April 19, two and a half weeks ago. I too got diagnosed with Stage IIIB rectal cancer. I didn't know what a PET scan was, had to google it. I'm trying to make it through 1 day at a time. I start my pre surgery chemo/radiation on Monday May 10th for 6 weeks. I've read about recurrences, but didn't realize it could be anywhere in the body, again, I'm kind of cancer ignorant. Not familiar with CEA either, but I'm sure I will be sooner or later. And METS, is that moving to other organs? And yes, had to look up NED also. If you don't mind me asking, were you able to have resection, or colostomy. Reason I ask, my tumor is large, 8cm and very close to opening 2cm and surgeon is pretty sure I will have permanant colostomy, I'm 44 and that seems to be hitting me the hardest. I've had some people on here and family and friends that say they need to be sure to remove it all to survive, I realize that and believe me that is a major plus for me :) My youngest daughter just graduated high school and my youngest boy is 16 and I would like to be around for a long time. But I know I'm going to have some issues with the bag if that's what happens. Just trying to get some more input on it from people who know. Again, great for you, hope you make the 2 yr mark at least 10 times over. Will be thinking of you, as well as everyone on this site we're so unfortunately on. Hope all is well. Joe
  • msccolon
    msccolon Member Posts: 1,917 Member
    #13
    dorookie said:

    I hear ya
    I remember being so scared because I had always asked God to let me live until my daugher was 18 and on her own. Well I was going through my second round of treatment when my daughters 18th Bday was coming up, let me tell ya I was scared. I felt bad because I felt like I had to renig on my wish because I wanted to live, way past my daughters 18th Bday. Well she is past 18 and I am still here.

    I will be praying for you and for good news.

    *HUGS*
    Beth

    God doesn't make bargains
    I truly believe that God is a loving and caring God and that He does not bargain with us. He has a plan for each and every one of us, although I don't believe in predestination, so we all have a part to play in our destiny. However, I think it's a one-sided thing when we believe we have made a bargain with Him. I just see Him laughing to Himself when we do that; He doesn't hold it against us, but it isn't a binding contract! Just IMHO
    mary
  • Kerry S
    Kerry S Member Posts: 606 Member
    #14
    You also have a new goal
    Tara,
    You got the prayer. You also have a new goal. Now you need to see those kids get married. You can do it. You have shown yourself that by setting goals, you obtain them.
  • taraHK
    taraHK Member Posts: 1,952 Member
    #15
    JR6020 said:

    Happy for you
    Tara, First would like to say it's awsome you made it to your kids graduation, now shoot to be around for your grand-kids graduation. I'm very new at all this, no family history (don't even really know any one with cancer). That all changed on April 19, two and a half weeks ago. I too got diagnosed with Stage IIIB rectal cancer. I didn't know what a PET scan was, had to google it. I'm trying to make it through 1 day at a time. I start my pre surgery chemo/radiation on Monday May 10th for 6 weeks. I've read about recurrences, but didn't realize it could be anywhere in the body, again, I'm kind of cancer ignorant. Not familiar with CEA either, but I'm sure I will be sooner or later. And METS, is that moving to other organs? And yes, had to look up NED also. If you don't mind me asking, were you able to have resection, or colostomy. Reason I ask, my tumor is large, 8cm and very close to opening 2cm and surgeon is pretty sure I will have permanant colostomy, I'm 44 and that seems to be hitting me the hardest. I've had some people on here and family and friends that say they need to be sure to remove it all to survive, I realize that and believe me that is a major plus for me :) My youngest daughter just graduated high school and my youngest boy is 16 and I would like to be around for a long time. But I know I'm going to have some issues with the bag if that's what happens. Just trying to get some more input on it from people who know. Again, great for you, hope you make the 2 yr mark at least 10 times over. Will be thinking of you, as well as everyone on this site we're so unfortunately on. Hope all is well. Joe

    colostomy
    Hi Joe,
    Thank you for all your warm wishes and words. It sounds like you are on a steep learning curve -- there is a lot of terminology to learn! Feel free to come to this board anytime - no question is dumb. I learnt SO MUCH on this board -- more than anywhere else.

    For your information: I had a very low tumour and, yes, I did end up with a permanent colostomy. Of course this is not what you, me, or anyone else wants. BUT - I promise you -- it is not that big a deal. I was 44 at the time of my surgery. I have led a very active life since the colostomy including swimming, hiking, hot tub, massage (OK, that's not "active" ha ha). Wear almost anything I want (not a bikini but I was a bit past that anyway!). It is a big adjustment at first, but can soon become "no big deal" - I promise. Feel free to ask me or others any quesitons about this. ANd, there are a few other websites dedicated to "ostomates" - which can be very useful too.

    Good wishes to you! May you hit that 2 year mark over and over again too!

    Tara
  • taraHK
    taraHK Member Posts: 1,952 Member
    #16
    Kerry S said:

    You also have a new goal
    Tara,
    You got the prayer. You also have a new goal. Now you need to see those kids get married. You can do it. You have shown yourself that by setting goals, you obtain them.

    New goals
    You are right - I need new goals! Dancing at their weddings is a great one. Oh and wait -- I haven't climbed Everest yet (ha)
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #17
    looking for good news
    Tara,

    As I said on my reply on the other thread to you, I will be thinking of you when I am in the scanner getting my scan done about the same time. Deep breaths- let's help keep each other calm, here.

    Take care & I'm praying for you-
    Lisa
  • JR6020
    JR6020 Member Posts: 14
    #18
    taraHK said:

    colostomy
    Hi Joe,
    Thank you for all your warm wishes and words. It sounds like you are on a steep learning curve -- there is a lot of terminology to learn! Feel free to come to this board anytime - no question is dumb. I learnt SO MUCH on this board -- more than anywhere else.

    For your information: I had a very low tumour and, yes, I did end up with a permanent colostomy. Of course this is not what you, me, or anyone else wants. BUT - I promise you -- it is not that big a deal. I was 44 at the time of my surgery. I have led a very active life since the colostomy including swimming, hiking, hot tub, massage (OK, that's not "active" ha ha). Wear almost anything I want (not a bikini but I was a bit past that anyway!). It is a big adjustment at first, but can soon become "no big deal" - I promise. Feel free to ask me or others any quesitons about this. ANd, there are a few other websites dedicated to "ostomates" - which can be very useful too.

    Good wishes to you! May you hit that 2 year mark over and over again too!

    Tara

    Thanks Tara
    Thanks for reply Tara,
    Hate to hear you had to have the colostomy, but it sure is helpful to hear from someone who has been through it. I'm scared about everything, but when I found out about that I really hit bottom. I have an awsome wife of twenty years that has been the best suppport possible, but it seems like that is going to be a constant reminder of everything, not to mention the fact I'm not gonna look near as good in my speedo....ok never really have worn a speedo :) Great to hear about the swimming and hot tub, we have a pool we use for our "family Sundays" where I cook out with the kids, grandkids and yes, even the mother-in-law (actually have an awsome mother-in-law too:) Had been thinking about putting in a hot tub before all this happened, but thought that was out of the question with all the heat. They are so relaxing, would be nice. Again, keep up the good spirits. I think attitude is one of the biggest part of getting through, I'm trying. Best wishes
    Joe

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